Thursday, May 23, 2013

I am most comfortable with my boys with special needs when I am walking the halls of our local children's hospital.

I smile at other parents and they smile back in a comfortable camaraderie. Staff members wave back at the boys like they are genuinely glad they are part of the same world. There are no looks of pity, only empathy or even better, delight at how cute they are.When I see people glance in the stroller, I don't worry whether or not Bo has his tongue out. When Eon loudly verbalizes a string of syllables with no actual words attached, I don't instantly shush him. When we're on the elevator and someone's attempt to engage Bo falls flat, I don't rush to make excuses for him. I don't feel the need to normalize them when we're in the safety of that setting.And it makes me sad that I feel the need to normalize them at all. But I do. I've learned, as a special needs mom, that people are more accepting of my kids if I treat them with absolute delight even if they are not being particularly delightful. I've learned to pretend like I'm having a ball even when I'm ready to pull out my hair.And so I scoop up Eon and tickle him when he bolts down the aisle of the grocery store for the third time today, even though my back is killing me and I'll pay for it later. I kiss Bo on the cheek so that he'll smile instead of stare suspiciously at someone who is trying to talk to him. When Eon shakes off my hand and races ahead to the elevator, I smile and call out, "Press the down button, please," while desperately hoping he actually stops at the elevator this time. When Bo gnaws on the arm of the chair he's sitting in, I calmly tap him on the head and say, "No, no, Bud. Here, let's read this book," as I pull him onto my lap with a big smile (because there is no way he's going to stop unless I remove him from the temptation.) I make a crack about women drivers when the wheel sticks on the stroller my son has to ride in because, at three and a half years old, he's still not a proficient walker. I smile when I retrieve the four hundredth object he's thrown today, and comment, "Wow! You'll be a great ball player, someday!"Most of the time I do it, in part, so strangers will have a positive experience with a child with special needs. Maybe our interaction will help them be more accepting of someone else in the future.In part, I do it so people can get a glimpse of what I see when I look at these boys...children of worth and incalculable value with unique personalities, full of fun and mischief.

But, I also do it because I am filled with foolish pride and cannot stand the looks of pity and even scorn I receive when I behave as if I am as harried as I feel. I've learned that when you get frustrated with your typical kids in public, people don't pay any attention. But, if you get frustrated with your kids with special needs, people give you a knowing look that seems to say, "You poor dear. Your life must be so hard." I loathe that look because, while my life is hard in that moment, that moment is just a tiny part of the remarkably satisfying whole. So I pretend.And I normalize them to others by my response to them.But at the children's hospital, there is no need to do this. Almost everyone there knows my children are precious in spite of their special needs, because their children are precious too, in spite of the medical issues or disabilities they have. The staff don't mind my children's quirks or my frustration with them. They've seen it all and choose to come to work everyday to see it all again because they love kids...of all abilities.I am home there. Different is normal in those halls. I am among my people and it is refreshing.And that is a little sad to me.

Saturday, May 18, 2013

"Some days/weeks it's about the special, and sometimes it's about the needs."

That's what my friend, Cara, responded on a facebook post of mine this week. I think it's genius. Generally, our lives are about the special, but this week, it seemed to be all needs. We had four therapy appointments, two specialist appointments, a preschool screening, and a medical procedure under general anesthesia that resulted in a new and unwelcome diagnosis (subglottic stenosis).I'm tired.Even without all that other stuff, I'm tired. Bogdan is a terrible sleeper. Which is funny, because the one thing they told me about his habits was that he "is a very good sleeper." HA! Joke's on us.

Let me tell you, sleep is very important to me. It almost ranks up there with coffee. I am one of those people who must have eight hours every night and nine on weekends to be a functioning, pleasant member of society. I am not sure how I survived the newborn stage of our other seven kids except that I was younger then. I am not coping well with being awakened multiple times a night, every night by our new three-year-old, no matter how cute he is (and he is so cute). Before we adopted him, I tried to prepare myself for every possible outcome. I was prepared to feel as if I were caring for a stranger, prepared for RAD and acting out, prepared for health issues and parasites. For whatever reason, (probably because I had a piece of paper telling me it wouldn't be an issue) I was NOT prepared for unending sleepless nights three months after recovering from jet lag. The other night, I was crying in frustration, knowing I had to get up in just two hours to go to work and I had been up with him, off and on, for hours already. I took pillows and blankets downstairs to sleep on the couch. I felt God ask me, "Will you lay down your expectations and give this to me?"I realized that most of my frustration was because everything we've tried has failed to make it better and because his sleeping is so random and unpredictable. Most nights, he sleeps for about four hours total, but sometimes, he sleeps a full eight, albeit interrupted. Most days, he seems fine, but sometimes, he can hardly keep his eyes open. We've tried naps and no naps, later and earlier bedtimes, melatonin, etc.I've mentioned before that I like to be in control. I cannot control this kid's sleep habits and it was driving me crazy. I like predictable and my nights are anything but.If I give up my expectation to sleep through the night and lay down my need to fix this, my stress will decrease. If I am simply grateful for the sleep I do get, I'll have peace. So I did that in the wee hours of Thursday morning from the comfort of the couch. Last night, he slept through. I don't know if there is a correlation, but it was a gift and I am grateful. This morning, I experienced that grace again. Bogdan had a bronchoscope to determine the cause of his stridor and wheezing. I was reading my Bible when they returned him to me. I closed it having just read:

"But one thing I do: Forgetting what is behind and straining toward what is ahead..." Philippians 3:13

The doctor told me that he has significant scar tissue causing serious narrowing of his airway. "I don't want to scare you, but it's bad," were his exact words. He informed me that it's not currently life threatening but will be if he gets croup or an upper respiratory infection and referred us to the ENT.

As soon as he left the room, I was overcome with guilt. Bo had been home just a day or two when he developed croup and had a weird breathing pattern. We debated about taking him to the emergency room, but talked ourselves out of it in part because we'd dealt with croup before with other kids and thought we could handle it at home. According to our oximeter, his O2 sats were low, too, but I rationalized that it's a cheap machine and a pediatrician once scoffed at me for using it with Eon. What if we'd lost him because of our foolish pride?! My mood began to deteriorate as fear and regret washed over me. Suddenly, the Word came flooding back.

"Forgetting what is behind and straining toward what is ahead..."

It's in the past. We didn't lose him. We move forward from here. What grace that I read those words immediately before I needed them!This week was stressful. It was all about the needs. I did not cope well. I was short with my kids, irritable with my husband, crabby with my co-workers, craving fast food, stuffing with cookies. But God is good and He was here. And that, and a full nights sleep are worth writing about.

Tuesday, May 7, 2013

Dear Anonymous,Can I speak to you for a moment? Can we talk about the elephant that's in the room? It's going to make you angry, but please, bear with me.You are not going to convince me that you made the right decision. I am not going to embrace it as acceptable or practical or personal to your circumstances. The life a child was willfully and consciously sacrificed. I cannot and will not think that is okay.When you tell me that it has not affected you, I do not believe you. I cannot believe that anyone can take the life of another and walk away unscathed. Sin leaves a mark.As a fellow sinner, I know this. I know about scars left on my heart by my own hand. I know what it feels like to be left utterly bereft by my own choices. I know how it is to be wholly separated from God and completely alone in a pit of my own digging. I know the heart grows harder over time and that it gets easier to justify my actions and to believe the lie that what I've done is not so bad, that others have done it too, that the reasons I had were good. I know how angry it makes me to be confronted with truth and to have my sin exposed. I made a different decision when confronted with a Down syndrome pregnancy. I chose to decline further testing and continue my pregnancy. I chose life.But time and time again, life has not been my choice. The Bible says that the cost of sin is death. I, too, have willfully and consciously and repeatedly chosen death. Sometimes out of fear. Lack of trust that God loves me and works all things for my good is a constant struggle of mine. Sometimes, it seems easier to ignore that still small voice and act in what I think is my own best interest. Sometimes out of pride. The Bible says that pride leads to a fall. Boy, have I fallen. How often I fall. I insist on my way and my rights. I think of myself more highly than I ought.And sometimes I don't know why. As the ancient teacher, Paul, wrote, "When I want to do good, I don't. And when I try not to do wrong, I do it anyway." (Romans 7:19 NLT) Maybe it's just because I feel like it. The lusts of the flesh, as the Bible calls them, are comforting to me. They palliate my discontent, my boredom, or my inadequacy. But I also know my heart longs to be free from all the ugliness and darkness. It wants to be free from all my justification and excuses. It wants to be understood, to feel whole, to be known, and to experience love.I want to be free.And that can only come from one place, from one person. The Creator of the universe, the One who planned our days before there was even one of them, wants to know us. He longs to comfort us, to set us free, to make us whole. Someone took our place and paid the price of our sin for us. Jesus died so that we don't have to. When we run to Him, He sees us and embraces us and we are free. We can lay our sin at His feet and walk away new, transformed.It's there...forgiveness. It's ours for the accepting and redemption is the result.I'm so sorry. I have judged you. I struggle with it, still. I mistakenly and arrogantly decided that your sin was worse than mine. But it's not. All of us have sinned. None of us measures up to the perfection that is God. Least of all me. I'm sorry that I pretended that I did.
(In order to maintain my sanity, I will not be publishing anonymous comments to this post.)

Saturday, May 4, 2013

Recently, I read this and it resonated with me. The author and I have similar backgrounds and I, too, once thought my Republican voting record proved me to be pro-life. For me, it was all about the baby and in my mind's eye, the woman deserved any post-abortive fall out she may experience. I've become more moderate about a lot of things in my old age. For one, I look at abortion as a tragedy for both mother and baby. I can empathize with moms who feel trapped by impossible choices. I used to virtually stalk a message board on Baby Center that was entitled, "Termination for Medical Reasons." I knew that the number one "medical reason" to terminate a pregnancy is Down syndrome. I was hoping to reach out to an undecided woman and share my story, give her up to date information, and show her that life with Down syndrome is a life worth living. While I did contact many women, very few responded, and, to my knowledge, none chose life. I remember reading post after post about the experience and fall out. At first, I was horrified. Because of the lateness of the pregnancies, many of them chose to have labor induced at twenty to twenty-three weeks of pregnancy and to deliver their babies so they could hold them and say goodbye. They called their babies "angels" and they grieved deeply.It took me a very long time to respond with compassion in my heart. All I could think of were those innocent little lives taken at the will of the one who was supposed to love them most. And, I took it personally. If they thought their babies didn't deserve life, then it meant they thought mine didn't either. It stung. And made me angry.But there is no denying the fact that those babies are at peace and their mothers are decidedly not. According to the posts I read, they struggled when they returned to work and someone asked them about the baby. They struggled with the secrecy and having to say they "lost the baby," out of fear of judgment if someone discovered the truth. They struggled with the noticeable pregnancies of strangers and with baby shower invitations and family outings. They struggled with depression and guilt and "what might have been" and loss.These women are hurting and that hurts me, too. It's a tragedy, all the way around. A loss is a loss...no matter the cause. It's still hard for me to admit that, but I know it's true.I get to sit on this side and enjoy my boys. I get to melt into Eon's bear hugs and laugh at Bo's antics. I get to celebrate them and read them stories and kiss them good night. I get to tickle their toes and run their baths. I get to grow old with them. I am blessed.I have no right to sit in judgment of those who believed the medical establishment when told, "it is for the best"; those who experienced the same fear I did, once upon a time; those who could not imagine the joy and satisfaction in the life I now lead; those who convinced themselves it was the best decision for their baby.Those left simply with an ache and not a child.They are victims and, while I know they so desperately wish to think themselves heroes, victims they remain, bound to a choice they made during an unbelievably vulnerable and terrifying time. While I mourn for their children, I mourn with them, too. A follow-up to this post can be found here.